Does anyone else here have ongoing or chronic illness that they are having a heck of a time getting properly diagnosed and treated? I’m going through it, but I’m also if a certain age where everything is blamed on my hormones. Anywho, I’d love to commiserate with anyone experiencing the same thing.
Urgh, I know how you feel - I’ve had the worst luck with doctors not listening to me in the past, and sometimes literally making stuff up … I felt like shit for over 10 years because of bad doctor’s advice.
If they’re blaming your problems on “hormones” then you could ask them for a referral to an endocrinologist … that way you get to come back with paperwork to say they can’t blame that any more.
Of course, it might be different if you’re in the US :-/
I am in the US and finally forked over the money for a concierge doctor. It helped get the referrals I need, but even the specialists are skeptical at times. For example I complained about some pretty bad stomach pain and my GI doc was like, fine I guess you can go for a gastric emptying study. And thank God, because it turns out that is at least one of my problems. I feel like if your problem is outside of the 12 things they see frequently, the system comes to a complete stop. Frustrating!
I’m having problems just trying to get a problem with my foot taken seriously, let alone trying to get something chronic diagnosed…
First asked my GP in Feb, got a physio appointment book a month later. Just told me to do some muscle exercises. Shockingly these did not help the problem…
Self referred to the local specialist musculoskeletal service, over two weeks later I get told they have my referral and there is a 9 week waiting list…
After a day where I could barely walk at all, contacted my GP again and got an appointment. Prodded around a little, took notes and sent me off to the hospital with an X-ray request. this was last week and I’m waiting for a phone call today to discuss the findings.
This is for a problem where it is localised in one tiny area, I can explain exactly what causes it to hurt, precisely where it hurts, what helps it not hurt and what the pain feels like. I can’t even imagine trying to navigate this with something more global like fatigue or general chronic pain…
I’ve been having trouble with fatigue. It has been unwanted and getting a diagnosis has been long and frustrating. I need to take next steps. The whole process has been so slow, opaque, expensive, onerous.
My fatigue was a clue, but not the end of the rabbit hole. I did lean into family history to get me some direction, which helped a bit. I’ve concluded that medicine isn’t as far advanced as I want it to be sometimes.
You got me thinking. There is a duality in many areas. Including medicine. Where in some areas there are insights available at such a tiny level. But sometimes the best strategy is try something and see what happens.
I’m also also in the US and the problem I’m having right now is that I moved from one state to another, and I can’t switch my medicaid over to the new state until the old state is closed out, and I can’t do that until my caseworker, whom I ve never met or had any dealings with, chooses to follow through on my request. They are literally the only human on the planet standing between me and medical coverage and I can’t get ahold of them. I’ve left Voicemails, and just spent $17 to send a certified letter that requires a signature. It’ll hopefully get there by Friday, because the post office had zero options to get it there overnight. Meanwhile, i’m running low on medications, and in a lot of pain that I need to see a doctor about ASAP. I may have to spend 8 hours in the car tomorrow to go back to the old state on the off chance that someone can help me in person.
OMG what a nightmare. I cannot imagine layering government on top of healthcare. It’s like the perfect storm of inefficiency. I’m sending good thoughts your way. I hope it is sorted quickly.
Does anyone else here have ongoing or chronic illness that they are having a heck of a time getting properly diagnosed and treated? I’m going through it, but I’m also if a certain age where everything is blamed on my hormones. Anywho, I’d love to commiserate with anyone experiencing the same thing.
Urgh, I know how you feel - I’ve had the worst luck with doctors not listening to me in the past, and sometimes literally making stuff up … I felt like shit for over 10 years because of bad doctor’s advice.
If they’re blaming your problems on “hormones” then you could ask them for a referral to an endocrinologist … that way you get to come back with paperwork to say they can’t blame that any more.
Of course, it might be different if you’re in the US :-/
Anyway, *Big Hugs* from all the way over here
I am in the US and finally forked over the money for a concierge doctor. It helped get the referrals I need, but even the specialists are skeptical at times. For example I complained about some pretty bad stomach pain and my GI doc was like, fine I guess you can go for a gastric emptying study. And thank God, because it turns out that is at least one of my problems. I feel like if your problem is outside of the 12 things they see frequently, the system comes to a complete stop. Frustrating!
It sounds like you’ve already fought like hell, but there’s a lot more fighting to do.
I wish you all the strength and courage to keep going! I hate those stupid systems and doctors with prejudice >:-(
❤️ thank you!
I’m having problems just trying to get a problem with my foot taken seriously, let alone trying to get something chronic diagnosed…
First asked my GP in Feb, got a physio appointment book a month later. Just told me to do some muscle exercises. Shockingly these did not help the problem…
Self referred to the local specialist musculoskeletal service, over two weeks later I get told they have my referral and there is a 9 week waiting list…
After a day where I could barely walk at all, contacted my GP again and got an appointment. Prodded around a little, took notes and sent me off to the hospital with an X-ray request. this was last week and I’m waiting for a phone call today to discuss the findings.
This is for a problem where it is localised in one tiny area, I can explain exactly what causes it to hurt, precisely where it hurts, what helps it not hurt and what the pain feels like. I can’t even imagine trying to navigate this with something more global like fatigue or general chronic pain…
I’ve been having trouble with fatigue. It has been unwanted and getting a diagnosis has been long and frustrating. I need to take next steps. The whole process has been so slow, opaque, expensive, onerous.
My fatigue was a clue, but not the end of the rabbit hole. I did lean into family history to get me some direction, which helped a bit. I’ve concluded that medicine isn’t as far advanced as I want it to be sometimes.
You got me thinking. There is a duality in many areas. Including medicine. Where in some areas there are insights available at such a tiny level. But sometimes the best strategy is try something and see what happens.
I’m also also in the US and the problem I’m having right now is that I moved from one state to another, and I can’t switch my medicaid over to the new state until the old state is closed out, and I can’t do that until my caseworker, whom I ve never met or had any dealings with, chooses to follow through on my request. They are literally the only human on the planet standing between me and medical coverage and I can’t get ahold of them. I’ve left Voicemails, and just spent $17 to send a certified letter that requires a signature. It’ll hopefully get there by Friday, because the post office had zero options to get it there overnight. Meanwhile, i’m running low on medications, and in a lot of pain that I need to see a doctor about ASAP. I may have to spend 8 hours in the car tomorrow to go back to the old state on the off chance that someone can help me in person.
OMG what a nightmare. I cannot imagine layering government on top of healthcare. It’s like the perfect storm of inefficiency. I’m sending good thoughts your way. I hope it is sorted quickly.